My Music Teacher Said I Couldn’t Play Because I’m Blind. So My Classmates Rebelled.

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As a middle schooler, I rarely noticed or thought about my blindness.

I happily dashed from school to sleepovers to choir practice, leaving my cane at home and holding fast to my friends’ hands whenever roadblocks threatened to impede my progress. The angsty gloom and doom which typically clouds those tweenage years flew right over my head. Nevertheless, when the time came for me to attend chorus camp — a mandatory, ten-day retreat with 80 middle and high school students I didn’t know — I was terrified.

To my surprise, the first few days of camp passed with relative ease. In between choral rehearsals, campfires and talent shows, white-water rafting and swimming, and lessons in voice, dance and African
drumming, I daydreamed about our upcoming instruction in handbells and chimes, a skill I’d been dying to learn all my life.

We were told not to wear tank tops to handbell class, as the instruments were muted by pressing them against the shoulder. After changing clothes, I and the other first altos filed into class. The second sopranos were finishing a run-through of their piece, and the moment the crystalline music swirled into my ears, I was enchanted. The round sweetness of the notes, with their lilting, somehow liquid shine, reminded me of cotton candy — of that singular, sugar-spun giddiness the first fluffy bite always evoked in me. My throat tended to ache when I heard a song I desperately wanted to sing. My hands tingled with a wild eagerness to become a part of that sound.

The instructor directed my group to choose bells and to read the accompanying sheet music, which would have our bell’s note highlighted. One of the older girls, who was well-versed in music theory, guided me behind the table, carefully passed me my bell and opened her own music alongside mine.

“I’ll tap your hand a beat before your note comes in,” she told me.

Abruptly, the instructor abandoned her lecture and circled the table, drawing me aside.

“I don’t think it’s appropriate for Caitlin to participate in this. She’s not able to sight-read; if she makes a
mistake, it’s going to throw off the song. And the bells are very expensive… she might drop one or play it improperly.”

Now, with 24 years and plenty of self-advocacy skills under my belt, I can think of many things I should have said, many things I would have no problem saying today, either on behalf of myself or the
children I teach.

“It’s illegal for you to exclude a student with a disability from any activity.”

“We already figured out a solution to the accessibility problem, no thanks to you.”

“I’m no more likely to make a mistake or misuse an instrument than any other student.”

“This is a learning experience, and no one plays perfectly on the first try.”

But I was only 12 years old. Never in my life had an adult told me I couldn’t do something. Never before had anyone intimated that I was incapable of doing something. My hurt and disbelief manifested in stunned silence. The other students argued, loudly, on my behalf. Leah, a voice teacher whom I did not yet know well, objected furiously. I came out of my own shock enough to promise that I would pay attention and do my best. But the handbell instructor remained unmoved. I could sit and listen, but I would not play.

I remember the protective conviction I felt in Leah’s fingers as she took my hand and hustled me out of the classroom. Behind us, just out of my reach, the handbells sparkled into life. They sounded the way I
imagined the color silver must look. Leah caught my tears on her fingertips and hugged me tightly. She
guided me to the snack bar, bought me a scoop of chocolate ice cream and promised I would be allowed to play. I was permitted to join the handbell class on the final day of class, when the instructor grudgingly admitted that my “deficits” would be less likely to affect the quality of the performance. But by that point, I was tense, anxious, on edge. The handbells lost their cotton-candy clarity as I concentrated fiercely on not making a single mistake, on doing everything I could to prove the teacher wrong.

Camp was coming to a close, and the first altos, particularly the senior girls, had officially taken me under their wing. To them, what had happened in handbell class — and what little had been done to remedy it –was unacceptable. And unbeknownst to me, they had a plan all their own.

On the night of our final concert, each of the senior first altos wore the skimpiest tank top she owned. As the girls ambled past me, in no hurry to change their clothes at the dorm, one of them squeezed my shoulder and whispered, “Maybe this little delay will give her time to think about what she did.”

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Caitlin-Dreaming

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An Unusual Work Call Turned an Ordinary Tuesday Into a Day I’ll Never Forget

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I received a call at the office one Tuesday morning from what seemed like an elderly man.

“Kunst Painting. How can I help you?” I said.

“I’m looking for Bob. Is he around? I need an estimate today… not tomorrow or the end of the week. Today!” he spouted impatiently.

I went through my typical probing questions to figure out what type of estimate and possible client he might be. When someone calls asking for “Bob” (my grandfather who retired well over 15 years ago), I know they’re in desperate need of painting. Fifteen plus years without painting? Well, you get the picture.

“I didn’t catch your name, sir,” I said.

“Bill,” he murmured.

“I’ll see you in an hour, and thanks again for the call.” I hung up.

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Me and my Papa

As I pulled down the quiet street where Bill lived, memories of my grandfather (who we call, “Papa”) filled my mind. Papa’s van smelt like a combination of dirty paint thinner and the remnants of a Wendy’s cheeseburger. I can still hear his suitcase full of 4, 6 and 8-inch block brushes sliding back and forth. “You know, John, if I can give you one piece of advice it’s that you should be your own boss. First one hired, last one fired!” Papa said.

The narrow, tree-filled street Bill lived on wasn’t anything to write home about. It was in need of major repair; the sidewalks were a skateboarder’s worse nightmare. I turned my truck engine off, grabbed my clipboard, business card and measuring wheel from the passenger seat and headed towards Bill’s single story, four-bed, two-bath barn red home (painted in some sort of barn red). The sun and elements had nearly worn right through every bit of color. It was patchy and looked like some college kid vomited red wine all over the siding.

I was 10 feet from the entrance when the door swung open.

“You John?” he asked.

“Yes, sir. That would be me,” I said with a calm smile.

“You look like your grandfather, only younger… and taller,” Bill said in a hurried manner.

At this point my mind was still stuck in memory lane with Papa. What did this Bill guy want? I thought. Obviously, he needed a paint job, but why was he in such a hurry all of the sudden?

As Bill walked me around the outside of his house, he pointed out several mishaps and flaws that needed to be addressed. He mixed in stories of his kids growing up and playing in the backyard. When we reached the back patio, Bill slowly sat down in what seemed like his chair. The four-legged, mustard-yellow chair looked as old as him, yet comfortable and sturdy as a grandfather’s chair should be.

“Bill, just curious, what’s the hurry? Why did you need me hear by midday?” I asked. “It’s not like the house is going to fall down.”

“John, you seem like a nice young man. By the way, your grandfather was the nicest man, so I’m already leaning towards liking you” he said with a smirk.

I grinned, thinking, This old guy is a hoot.

“I’m in a hurry because I woke up today willing for the first time to pull the trigger, to make a change. I’ve been coming out here since before you were born, mostly to watch the birds eat my fruit trees. They like those apricots the best! My house hasn’t changed in 20 years. Not since my son died.”

My eyebrows lifted as Bill began to open the floodgates. He fascinated me. Actually, most old people fascinate me, but something about Bill caught my attention, and I yearned to know what this man was about.

“It’s time I fix this place up a bit. I come out here every day and reminisce. I’m 79 years old, and most of my family has either died or moved away. Since my son died of leukemia 20 years ago, I’ve fixated on the memory of us painting this old place together and wish we could do it all over again.”

My heart sank as I sat down next to Bill; the padded chair creaked; it hadn’t been sat in for quite some time. Emotions ran through my body faster than my heart could pump blood. Tears began to build.

Jack_Smiling “I understand, Bill. My 4-year-old son was born with Down syndrome and is currently battling leukemia. He was diagnosed November 12th. There isn’t an hour that goes by that I don’t think about him, the disease and the affect it has had on our family. I couldn’t imagine losing him.” My eyes were burning.

We walked the rest of the house and chatted about how far the medical field has come in the last 20 years, the chemo treatments, the blood work, the bullsh*t. I shook Bill’s hand, and he pulled me close. “Cherish the moments you have together and get a brush in that boy’s hand,” he said. “It was the best thing I ever did.”

I got in my truck and left. As I drove back to the office, I thought of Papa again and what Bill just said. If it weren’t for Papa’s advice back then, I would have never met Bill and heard his story.

Jack — get out the brush!

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For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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This Poem Sums Up What It Feels Like To Be a Parent to a Child With Autism

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I’m on the outside looking in.

And although I’ve been here awhile,

You never really get used to it,

It just becomes your lifestyle.

It’s a different kind of existence.

One that requires a unique type of persistence.

On the outside looking in,

And what do I see,

Lots of children talking,

Their voices sound so sweet.

But my child is silent, no words does he say.

It’s like a part of him is locked away.

On the outside looking in,

And I can’t help but stare

When I see children say they’re hungry or thirsty,

Or tell their parents when they’re hurting somewhere.

But my child’s moans are really all the same.

And so I’m forced to continue this exhausting guessing game.

On the outside looking in,

And when I look around,

I see children singing along to songs,

Their voices abound.

But no melody from my child will you hear.

It makes me wish I could just disappear.

On the outside looking in,

In a state of woe,

As children wave their hands,

To say goodbye and hello.

But my child does not yet know how to greet.

Just another reason I feel the urge to retreat.

On the outside looking in,

I gaze enviously,

As parents give directions to their children,

And their children understand them clearly.

But my child doesn’t comprehend most of what I say,

For him, the simplest concepts are so difficult to convey.

On the outside looking in,

I watch with jealousy,

As children point to whatever interests them

Little hands exploding with intensity.

But my child’s hand stays at his side.

It’s not even something I’ve seen him try.

On the outside looking in,

Tears rolling down my face.

I wipe them away as quickly as I can.

All signs of melancholy erased.

I try to maintain a tough facade, pretend I’m too strong to weep,

Instead I fall apart at night, when my house is dark and all are asleep.

On the outside looking in,

Surely the others must see me

And have some compassion,

At least to some degree.

But unfortunately it seems as though

Very few have any sympathy to show.

On the outside looking in.

Never feeling like I truly belong.

Yet I continue to try to fit in,

Why do I insist on playing along?

I only walk away feeling defeated and more alone.

It’s not something I can continue to condone.

On the outside looking in,

It’s such a lonely place,

I look to the left and right of me,

But there’s no trace of a single face.

I’m always searching, unfortunately to no avail.

Hoping maybe this time, my search will turn up a trail.

On the outside looking in,

It’s not where I chose to be.

It could’ve easily been you and not me,

On the other side of the door without a key.

“This could never happen to my child!” you might’ve said,

But no one can tell what lies ahead.

You just might find yourself where my story begins,

On the outside looking in.

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How My Father’s Brain Trauma Inspired My Business

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At some point in your life, you will receive a phone call that will change it forever. When my phone rang one morning in 2005, and I heard my brother’s voice on the other line, I knew I was receiving “the call.”

“Robin, Dad suffered an accident this morning.” The tone in his voice was incredibly grim. “He slipped on some black ice and hit his head in the fall. The injury to his brain is traumatic and his prognosis is bleak.” I hung up the phone, without saying or thinking much, and got myself to the hospital to be by my father’s side.

Anyone who has ever had a loved one in the ICU will tell you what a difficult time it is. While they lay there, hooked up to a series of machines and IVs, your system tends to go into shock. At first, I became as helpless as my father literally was. Then I became frustrated. Frustrated that this happened to him and frustrated that I could do nothing aside from hold his hand as he remained in a coma. Each day the doctors would deliver the same discouraging news, and I watched as my family become more and more hopeless. I knew I had to do something.

Fueled by the need to help my father, I began researching possible modalities outside the realm of western medicine. We utilized acupuncture, which helped him to open his eyes but that wasn’t enough. My father was still unaware of his surroundings and was a sick man.

One day I grabbed his feeding tube can, read the ingredients and became appalled by what was being pumped into his system. As I saw it, this wasn’t food at all but rather a liquid mixture of sugar and chemicals. I believed to heal, he needed whole foods nutrients, so I set out to make sure he received them.

When I couldn’t find any whole food alternatives to traditional feeding tube formulas, I took to the kitchen and began developing my own. Liquid Hope, as my family fondly dubbed it, is an organic blend of the best, most nutritious foods necessary for proper health. I researched and chose each and every ingredient for the benefits they have on the body.

Liquid Hope started out as nothing more than my way of providing my father with a daily regimen of healthy meals. I had no idea what kind of results it would have. As I witnessed him growing increasingly stronger, I realized I might have created something much bigger than a blend of vegetables and herbs – I might have created a powerful healer.

I never imagined looking at food as medicine, let alone taking a feeding tube formula public. I was a chef. That was what I knew and what I excelled at being. Now I can’t imagine my life without Liquid Hope… not just because I believe it helped my father, but because I’ve seen it help others since being made commercially available. I am grateful every day that I picked up that canister and read the label.

While my father was the inspiration behind Liquid Hope, the people it’s helped are who inspire me to keep looking forward. I began cataloging their success stories as a personal motivator, and as the amount of stories grows, so does my confidence in the healing powers of proper nutrition. Every day I receive remarkable messages on how Liquid Hope has touched people’s lives. But these people are completely unaware of how deeply they’ve touched mine. My “People of Hope” possess incredible strength, resilience and ability to endure what many cannot even begin to comprehend. They simply blow my mind and will forever be a part of my life. They’ve filled it with an endless amount of love and compassion and I’m grateful for them every day.

One doctor called my father’s recovery a miracle, and I would have to agree. Not only because he was able to return home with us, but because he inadvertently gave hope to a community of people that greatly needed it. My wish is that I can continue to expand upon this success and impact a greater amount of lives through Liquid Hope.

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Author’s Gripping Account of Her Son’s Condition Challenges How We View Mental Illness

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Screen Shot 2015-02-03 at 10.59.47 AM Randi Davenport is a writer based in Chapel Hill, North Carolina, and her story is one that parents of children with mental illness may recognize. Her son, Chase, diagnosed with autism, began showing signs of a serious mental illness by the time he reached age 14. He suffered horrifying hallucinations, became violent toward himself and even stopped recognizing his own family members. As Davenport sought treatment for Chase, doctors and specialists repeatedly told her they’d never seen anyone like him and didn’t know how to treat him. It became apparent that no one could help him.

Written with courage and unwavering love, Davenport’s memoir, The Boy Who Loved Tornadoes, tells the story of her family’s experience with mental illness and developmental disability. It gives voice to families who have endured similar struggles and had nowhere to turn. The Mighty had the chance to talk with Davenport about her writing process, what she learned about the mental health care system in the U.S., what she feels must be done to fix it and how everyone can help reduce the stigma our society has against mental illness.

Can you describe the moment when you first knew you had to write this book?

I never set out to write a book about my son’s illness. But in 2003, I was aware of a heated conversation about mental health reform in North Carolina, including everything from substance abuse, instability and mental illness. Policy makers were making their opinions known in the press about what had to be done, and I noticed there were no parents [of people with mental illnesses] making their voices heard. I decided to write a column for the local newspaper, and I’d written 100 pages when I realized this was more than a newspaper column. I still didn’t call it a book; that was too overwhelming. I don’t think I could have done it that way. I called it a project. I was doing it to offer something to the larger public, and I wanted parents’ voices to be heard. But when I’d written 600 pages, that’s when I realized I was writing a book and began to shape the pages into a manuscript.

How old was your son when he began showing signs of a psychiatric illness, and how did you initially go about getting a diagnosis for him? 

Chase began showing signs of psychosis at age 5 or 6. I took him to a child psychiatrist at a large teaching hospital in the midwest, and the doctor told me he thought Chase had atypical autism. When Chase went to hospital again at age 14, after showing more serious signs of mental illness, I asked that same doctor again what he thought it could be, and he told me he always thought Chase had childhood schizophrenia but didn’t want to say so at the time because it’s such a scary diagnosis. Chase does not have schizophrenia, but the psychiatrist should have been straight up with me from the beginning.

For much of the book, specialists were unable to diagnose the more serious psychiatric disorder that emerged when Chase was a teenager. How did this affect his treatment plans?

Chase is 27 now, and we still do not have a diagnosis. I was tasked with finding a place for him because everyone said he would need 24-hour care for the rest of his life. No doctor had ever met anyone like Chase, who had multiple symptoms that don’t lead to clear diagnosis. He hadn’t responded to anti-psychotics but insurance rules dictated that he couldn’t stay in the hospital indefinitely — nor was this the best place for him. Because he had competing diagnoses, residential facilities focused on one or another of the different treatment modalities (developmental disability, mental illness, substance abuse) couldn’t or wouldn’t take him

You and your family had to clear quite a few hurdles to find adequate treatment for Chase. Throughout that process, what did you learn about the mental health care system in the U.S. and in North Carolina specifically?

We lived in New York when Chase was little, and there was nowhere to turn to specifically to get him help. When we lived in the midwest, there wasn’t much there, either — we had the opportunity to have him removed from my house for a weekend, as a way to give us a break for a couple days, which seemed more like a punishment to me than a treatment plan. When Chase required intensive help, I quickly learned what was and wasn’t out there. Mostly, there wasn’t much. And things have only gotten worse since then. Funding for mental health has been slashed in this state, as it has been across the country. Hospitals have closed. There’s very little in the way of community housing for people with mental illnesses and many rural NC counties no longer have a psychiatrist in them. If you live in a rural county in North Carolina and have a mental health problem, you’re going to have a hard time getting help. Even families in the comparatively better-off part of the state where I live struggle to find the services they need. And just as my challenge was once finding long-term residential care for Chase, now that’s he’s done so well and needs to move to the community, I’m battling to find housing and services for him once again.

How much do these shortcomings you’ve described in the mental health care system have to do with the stigma our society has against mental illness?

Despite the fact that many families in this country are going to deal with serious mental illness at some point, the stigma attached to mental illness remains. As a culture, we still tend to view the mentally ill as suffering more from a moral failing or a character flaw than from a disease of the brain. I’ve even met parents who are very angry with their family member for getting sick and wish they would just snap out of it. And just think of the proliferation of horror films featuring a mentally ill villain–in these, mental illness becomes closely associated with extreme violence and the paranormal. Such representations enforce the idea that mental illness belongs to the evil.

How were you eventually able to find adequate treatment for Chase?

He now lives in the BART (Behaviorally Advanced Residential Treatment) unit at the Murdoch Center [in Butner, North Carolina]. It serves young men with dual psychiatric and developmental diagnoses with extreme behavioral problems. Most residents have a long history of failed placements and a history violence or crime, so Chase is different from most of the people who live there. But it’s worked well for him.

Can you describe a moment when you knew your book was helping others?

Oh, there have been so many. It was a very isolating period, when I was raising Chase. I began to connect with other people going through something similar experiences when I did readings in bookstores and on the radio. For people who do get it, it’s emotionally resonant. During a radio reading in Minnesota, a woman actually pulled over to the side of the road to call in and say, “You’re describing my son, you’re describing my life, you’re describing everything we’ve been through.” I still get emails every once in awhile from people who have had that “Oh my God, you’re telling my story” moment. I still get messages on the book’s Facebook page. There’s a lot of powerful sentiment.

How have your lives changed since your book was published in 2010?

If I were writing the book now, the ending would be: Chase is currently living without a trace of psychosis, he is holding down sheltered employment, he is working on his GED and he is ready to move from the institution where he’s lived for the past 11 years.

I published my second book last year, The End of Always, a novel that draws from a historical record of a mystery surrounding my great-grandmother’s life. One of the novel’s characters is similar to Chase, and I paint him in a much more positive light than how people with mental illnesses are typically portrayed.

How do we de-stigmatize mental illness?

I wish that every single person who encounters someone with mental illness would take a few minutes to get to know that person. They would then understand that that person is first and foremost, a person.

What advice do you have for families going through similar experiences to yours?

Don’t lose hope; you’re stronger than you think you are.

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To the Occupational Therapist Who Set the Bar High

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We met you before we had a diagnosis. You came to our house and worked with our son on what we thought were just delays and sensitivities. Upon seeing some of your first sessions with him, I questioned your methods and your ability to help him. I remember you sitting outside with him on a sunny day and trying to get him to finger paint. I remember him screaming and nearly hitting his head on the brick patio. I wondered why it was important for him to be able to finger paint. But the more I watched you and listened to you, the more I learned about the skills he was gaining to function in this world.

I remember he was over a year old, and he still would not pick up food to feed himself. Once you finally taught him that, you went on to teach him, at nearly 2 years old, how to bite off pieces of food so his sandwiches would not have to be cut up. You taught him to drink out of more than one color of sippy cup, and eventually we were finally able to give him a different color without a forty minute meltdown.

While working with him, you saw me at my worst. I didn’t know you well and often would open the door with tears streaming down my face from utter exhaustion and frustration. You always encouraged me and lent a listening ear when I needed to vent. You always offered new ideas and different methods we could try to help him overcome some of his most challenging behaviors and delays. You walked into what often looked like a disaster zone of a house and never batted an eye. You occasionally let my oldest son participate in the therapy session too, so I could lay down for 30 minutes after another sleepless night. While we were working through some of our darkest days and longest nights, you showed up every Thursday and gave us progress and hope.

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You were there when we finally got his autism diagnosis and helped me work through the emotions that came with it. We took comfort in the fact that we’d already started interventions and were already seeing a positive response to therapy.

Most important, you cared for him. You were as excited and as proud as me when my son would make strides or reach a new milestone. You taught me how to help him and how to continue to develop skills and make transitions easier, for which I am eternally grateful.

We had to move away from you, but there are reminders of your work every day. When he uses a spoon to eat, he quietly reminds himself “Don’t flip.” Whenever he sees little Chef Boyardee containers of ravioli he says, “Amy gave it.” When he’s stressed or overwhelmed with his environment, he asks me to count on him (using the joint compressions you taught me to calm him down). Whenever he sees a textured therapy ball, he remembers you and excitedly talks all about your blue “spiky ball.”  The little boy who was terrified of baths and hated water touching his head now showers regularly and loves it. The little boy who was perplexed by playground equipment can now climb, jump and swing with the best of them. The little boy who could not go out in public without throwing himself on the store floor or running away, now goes shopping with me all the time and holds my hand as we walk to the car.

We still have challenges, we still have a long road ahead, but because you cared we feel equipped for the journey. Thank you.

This post originally appeared on From the Bowels of Motherhood.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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